Brugge Reflections (Photo credit: Wikipedia)
The very personal world that we consider ourselves to be part of is entirely determined by self-definition. Many elements combine to make up our sense of self: past histories and experiences, the friends we choose to surround ourselves with, our mates, life partners and children, the jobs we do, the dwellings we occupy, the material objects we possess. These are just a few of the many components we use to construct our realities.
One of the key elements involved in our self defined realities is health, which can easily be taken for granted when things are going good. Once our physical well-being is delivered a serious blow, though, health suddenly leaps to the forefront, and if the diagnosis is serious enough, it can eclipse the total influence of all the other fundamentals combined. A chronic and debilitating illness can not only jump to the head of the line, but can bend, spindle, and mutilate many of the elements of a world that we had only recently felt so safely a part of.
At the moment of diagnosis, the newly ordained MS patient is blasted out of the reality they once knew and into a sort of parallel universe. None of the externals have yet likely changed much, but inside the patient a Big Bang has taken place, as former assumptions of self identity disintegrate, and new clusters of definition start forming through a haze of questions, shock, and confusion. Frustratingly, the outside world continues on as if nothing has happened, a perpetual motion machine that stops for the problems of no single person. As much as we may desire a timeout, just to catch our breath, none is granted. We must adjust to our new reality on the fly, which only adds to the sense of disorientation.
While we still exist in the world of the healthy, we are no longer truly a part of it, set adrift by the knowledge of a disease that lurks inside us, leaving us living in a world apart. Though a seismic shift has taken place, as long as the disease remains relatively mild the fissure is slight, the changes within at first recognizable only to the patient themselves. Our friends and family, when told of our predicament, offer heartfelt sympathy and measures of comfort, which of course are welcomed and much needed. What they can't offer, though, is a true understanding of the nature of the beast, as that damnable knowledge can only be fathomed by those who have been through the crucible of a body beset by disease .
Those of us unfortunate enough to quickly suffer the progressive disabilities for which MS has earned its cloak of dread soon see the chasm between our new reality and the one we used to occupy ever widen. While the members of the healthy population (sometimes called "Muggles" on some Internet MS sites) perform such amazing feats as effortlessly standing and walking, they cannot know the guttural anguish and inconceivable frustration involved in losing such abilities. Paralysis is one of the most feared conditions known to humanity. For good reason, most shy away from even the thought of it.
Those who love us, and in some cases take care of us, do their best to comprehend, and certainly suffer a brand of anguish and frustration all their own, but they are gratefully not of the world in which we now reside. Although they may empathize with us, only by living inside our skin could those who care ever truly know, and that is a fate I wouldn't wish on those I can't stand, never mind people I like and love.
Although we still occupy a place in their world, to the healthy our reality is an alien environment, beyond the grasp of those who are not residents. This can sometimes lead to seemingly callous remarks, or an apparent ham-fisted disregard to the sensitivities of the situation, but by and large I've found my dear Muggles do a remarkably good job of affectionately helping me navigate a world full of physical and emotional pitfalls that they themselves cannot see but with effort can get some sense of, like a blind person using a stick to navigate their way across Broadway. For this I consider myself lucky, as I know other patients have been left on their own by partners and loved ones who could not reconcile these new imperfect circumstances with their own versions of reality.
Strangers can be a different lot, as most are unfamiliar and uncomfortable with members of the world of the sick, who some may see as somehow diminished, and as reminders that their own complex reality is built on foundations of gossamer. Though most behave with a fair amount of grace, there are those who overcompensate to the alien in their midst, and say or do some incredibly stupid or insensitive things. I generally try to cut them some slack, as I when was in their shoes I was just as capable of committing similar stupidities.
Unlike the friend, lover, caregiver, or stranger who most likely has only ever lived in the land of the healthy, those of us with chronic illness have straddled two worlds. We the sick can remember a time when we were part of the healthy world, even if it now often seems like something of a place of wonder, and sometimes one of intense frustration. I can remember how wonderful it was to be free of disease, to be able to perform now impossible feats without even giving them so much as a fleeting thought. Although we may no longer be of that world, we still live in it, and within it we are constantly confronted with echoes of our own healthy past. I must admit to the occasional feeling of jealousy when watching a couple stroll hand-in-hand, or when my gaze sets upon somebody doing something as mundane as bending down to tie their shoe lace. How glorious to be unencumbered by a rebellious body, and what a rotten twist of fate to be saddled with disease. Still, though we might not be masters of our fate, we can and must be masters of our own reality.
Regardless of the world we live in, we owe it to ourselves to find contentment. Despite physical infirmity, our realities are still shaped by our thoughts, emotions, and perceptions, all of which can be harnessed, as they are a product of us, and not we of them. In each moment lies a kernel of good, and like a gold nugget it can sometimes be found resting right on the surface, but more often lies hidden under a pile of muck, requiring conscious effort be expended to discover it. By concentrating on what we have rather than what we've lost, on those who have shown us kindness rather than those who have been harsh, on this very moment rather than an irretrievable past or an unpredictable future, we can shape a reality that transcends the parallel universes of the healthy and the ill and find a place of self fulfilling satisfaction, where a diminished body needn't dictate a diminished existence.